I want to talk about one of the dark sides of being an autism mom. Grief. Yes, I’m talking about grieving the loss of a child who is very much still with us. This isn’t an easy thing to admit or publicly discuss because I know I am blessed to hold my sweet boy every single day. It’s also important for me to note that I realize my level of these emotions are nowhere near that of someone who has actually suffered the loss of a child—which would be unimaginably devastating. However, I do want special needs parents to know that their feelings of loss are natural, valid, and worth acknowledging.
Leading up to and immediately following Mason’s autism diagnosis, I experienced certain emotions similar to those of someone who has lost a loved one. “Why me?”, “Why MY child?” “Life will never be normal again” and “What would life be like if he didn’t have autism?” were just a few questions that constantly washed over me. Then it hit me—I was grieving the loss of a child I never truly lost. I tried to bury those emotions for a long time but it wasn’t until I embraced and acknowledged them that I began to overcome them. You see, we all have these images in our heads of what our lives will look like down the road—but when life throws us a curveball, that image gets distorted and we’re left wondering where to go from here because this wasn’t a part of “the plan”.
Mason was officially diagnosed in October of 2015 at almost 2.5 years old. It has taken me over 2 years to get to the point where I only occasionally find myself longing for the life I had always imagined. I honestly don’t expect that feeling to ever go away entirely and I’m more okay with that than I ever thought possible. Every week, month, and year that passes, we refine our hopes and dreams to fit our real life, not the life we had imagined when we were children.
To any parents reading this with newly diagnosed children, I just want you to know that every emotion you feel is valid and worth acknowledging. Grief is a process and no two people will experience it in the same exact way. Be kind to yourself and accept that you are doing your absolute best given an often complicated situation. Most importantly, enjoy your child and know that they are very much still here with you, just as they always have been. #masonandme #autismacceptance #autismmomgrief
We were in a car accident last week and thank goodness it was just a small one! {Not my fault, for the record! 😅} But it got me thinking about the “what ifs”…what if I were injured and couldn’t speak for Mason? What if emergency responders came to our rescue and they weren’t able to tell Mason has autism because autism has no “look”? What if he resisted help or wasn’t able to tell them his name? Then I did what any good mother does…I turned to Etsy for help! 😉 I found a decal for the back of my car and strap covers for his car seat harness. I already feel better about the “what ifs”, knowing Mason can now speak for himself without even opening his mouth. Anyone who attempts to unbuckle him from his car seat will be alerted that he is autistic and may not respond. You can’t put a price on that! #masonandme #autismacceptance #autismsafety
Yes, Mason has autism. But do you know what else he has? A contagious smile and the best laugh to go along with it. He has a great memory and a wonderful sense of adventure. He’s cautious at times but his curiosity will always get the better of him. He’s smart. He has the ability to figure things out faster than most. He sings like no one is listening. He has the most amazing brown eyes I’ve ever seen. He has more energy than a pack of puppies. Most importantly, he has a family who will love him for an eternity—and then some. #masonandme #autismacceptance
Autism or not, when your baby brother cries in the car, you cover your ears. 😂🙉 Mason is turning out to be such a great big brother! He’s gentle with Matthew and we’ve even caught some head pats and little hugs between the two of them. I’m overjoyed that they have each other—even if Mason doesn’t always appreciate the cries or toys covered in baby drool. #masonandme
One question I often receive is, “how did you know Mason was autistic?” I usually go on to list off a plethora of tendencies or red flags that we picked up on at a very young age. That’s what makes autism difficult to diagnose—there isn’t blood work or a body scan that they can do (at this point) that gives you an affirmative yes or no answer. Autism has no “look”. Once parents have their suspicions, a long and tedious process of evaluations and tests often ensues. For us, we started at 18 months with hearing tests—maybe he wasn’t speaking because he couldn’t hear correctly. Nope, he could hear just fine. Cross that off the list and move on to the next evaluation. Fast forward through 6 months of early intervention, speech evaluations, occupational therapy evaluations, developmental pediatricians and we finally had our answer at 2.5 years old. I used to wonder how kids went undiagnosed but now that we’ve been through it all, I can totally see how a child goes 9+ years without a diagnosis. The journey can be long, expensive and downright exhausting for the entire family. We are incredibly blessed to have the resources to make Mason’s journey as successful as possible. Over the next few years, my goal is to find a way to guide and assist families who are trying to navigate those early years and don’t know where to start.
Autism has made us into some pretty creative and resourceful people. Mason currently loathes pants but will happily wear shorts. The only issue with him refusing to wear pants is when it’s 30 degrees outside and you can already feel the judgmental stares from little old ladies at the grocery store before you’ve even left the house. 🙄 We’ve tried different approaches, different types of pants, even tried forcing them on him to see if he’d realize they really aren’t that bad once they’re on. No luck.
Let’s talk social media. I’m an 80’s baby who was raised in an era where cell phones, computers and social media are paramount. Throw in special needs parenting and I’m tempted to say that social media damn near keeps me going at times. Do I get tired of feeling so attached to devices? You betcha. Do I think life would be better without the constant (and often overwhelming) stream of information? Absolutely not. You see, being able to reach out to thousands of other special needs parents at the tap of an app has taken the often isolating task of raising a kiddo with autism and allowed me to feel anything but alone. I scroll through my newsfeed and read posts from all over the autism spectrum ranging from teenagers struggling with potty training to young men applying for their first job. In an instant, I am grateful my son has excelled at potty training and also forced to ponder whether Mason will one day be deemed employable by the harsh world we live in.
What is the hardest thing about autism? That is such a loaded question and to be honest, my answer changes every day. The hardest part for me lately is that Mason is no longer a baby, he can’t even pass for a toddler at this point. It’s no longer “cute” if people come over and he’s stark naked because he refuses to wear clothes while at home. His meltdowns in public are no longer just a toddler upset about not getting his way. His silence when adults ask him what his name is or how old he is can’t really be laughed off as shyness anymore. He’s going to be 5 years old this spring and he’s tall for his age. As much as I hate to admit it, I believe the hardest part of our autism journey is just beginning.
I have to say…Mason is such an awesome traveler. He gets anxious when it comes to transitions in general (i.e. getting dressed to go somewhere makes him uneasy) but man, this kid travels like a pro. If he isn’t asleep on the arm rest, he’s happily gazing out the window. He never makes a peep. When we were boarding our flight today, there was a middle aged man who appeared to have autism or some sort of cognitive delay and he was traveling alone. He was happily seated in the first row without anyone on either side of him. It never occurred to me that Mason might be able to fly solo down the road. Definitely made me stop and think about the future. Not sure I’ll ever be ready for him to do something like that but I hope all of the therapy and love he receives today prepares him to do something incredible like that one day! #masonandme #autismawareness #movemountainsbabyboy
Mason and Me 